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With many stillbirth deaths unexplained, Utah health officials surveying moms to find answers

SANDY — Ciara Jackson's doctor told her on June 15, 2011, to go home and pack up everything she would need in preparation to deliver her baby.

But instead of a parent's typical emotions of thrill and anticipation, Jackson and her husband gathered their belongings in a state of anguish and sorrow: Her baby boy Mckai, at 29 weeks gestation, had already died inside her womb.

"It wasn't what you anticipate packing a bag for a hospital delivery," Jackson remembers. "We knew we were going to the hospital to deliver a baby we were not going to be able to bring home."

Jackson sorted through her grief without ever finding out precisely what caused her son's premature death in the first place.

"We don't have any concrete answers regarding my son. We have some information gathered over the years, but an autopsy was never performed," Jackson, of Sandy, told the Deseret News.

"The doctor basically said, 'You're welcome to do an autopsy (but) insurance is not going to pay for it, and so you will pay for it out of pocket, and the likelihood of finding information that would actually be valuable to you is fairly low.'"

Additionally, Jackson said, "In my case, my son had probably been gone a little while ... so to think of putting his little body through more was not something I wanted to do."

Doctors did perform blood work and tested her blood and placenta, as well as the umbilical cord, but didn't discover anything conclusive, Jackson said.

She has since hypothesized that her genetic condition commonly called MTHFR — an issue with gene 5-methyltetrahydrofolate, which is responsible for breaking down folic acid into folate — might have been a factor, for which she has received treatment prior to her subsequent pregnancies, which both delivered healthy children.

Still, she said, "We never knew for sure just why."

In Utah, Jackson is among nearly half of women whose stillborn baby is never listed with an official cause of death. In an effort to address that lack of knowledge for grieving parents, the Utah Department of Health is conducting a wide-ranging survey with such mothers through the middle of next year.

The department began sending out its 65-question assessment, titled Study of Associated Risk of Stillbirth, beginning June 1, and will continue to do so for 12 months. Each questionnaire will be mailed to a Utah mother who has delivered a stillborn baby within the previous two to four months, said Nicole Stone, an epidemiologist for the Department of Health Maternal and Infant Health Program.

"The survey will delve into experiences that the woman might have had before and during her pregnancy, such as stress she might have been under, or (for example) if she was in situations where there might have been physical abuse," Stone said.

"We ask those kinds of questions — things you just can't get from a medical record. ... We will be looking at the same type of data we've collected for years and years from women who deliver live babies."

The stillbirth rate is considerably higher in the United States compared to other wealthy countries, and has remained steady for many years even as the infant mortality rate has declined signficantly, according to Stone.

Of the roughly 275 stillbirths in Utah each year, nearly half are not paired with an official cause of death, she said. A stillbirth is defined as an infant's death in-utero at 20 weeks gestation or later.

"In the United States there's been little attention given to stillbirths," Stone said. "It seems there are more programs and research done outside the United States and we're hoping to catch up with (others) in lowering our rates as well."

The survey seeks to identify numerous possible risk factors for a stillbirth that could be understudied, and its results will be shared with any researchers interested in analyzing the data set and extrapolating findings, Stone said.

The questions touch on many subjects, including information about other children the woman has given birth to, the woman's access to health insurance, whether she suffered from gestational diabetes or high blood pressure or ever needed a blood transfusion, the presence of other complications like vaginal bleeding or a urinary tract infection, smoking and drinking habits, and whether she suffered from clinical depression or anxiety.

Other questions about mothers' experiences following a stillbirth delivery include questions about whether they were allowed to hold, bathe or dress their baby, get photographs with their baby, use a cooling bed to prolong the time they can spend with their child after delivery, or whether they were put in contact with support group services.

The Centers for Disease Control offered pilot-level funding for such surveys in 2016, and Utah was the lone state to be awarded a grant, according to Stone. The $120,000 grant is intended to fund the development, data collection and analysis associated with the study over the course of three years, she said.

Dr. Robert Silver, chairman of the Department of Obstetrics and Gynecology at the University of Utah, said in a statement that researchers in the state "are very fortunate that the (department) received funding to perform the ... study."

"Stillbirth is heartbreaking for families and is far too common. It affects more than 26,000 births in the United States each year and is now more frequent than babies dying after birth," Silver said.

Jackson was part of a group of mothers who had delivered stillborn babies and who helped advise the Department of Health in designing the questionnaire, including how to use appropriately sensitive language. She said she hopes the mothers who receive it will find it within themselves to fill it out.

"If there are situations where answers can be found, and we can prevent the next generation from going through this level of pain ... I'm all about that," she said. "Because if stillbirth was no longer a thing, it would be amazing."

Stone also acknowledged the difficulty of encouraging participation among grieving mothers. Each woman will ultimately be given two opportunities to fill out the questionnaire by mail, plus a chance to do it over the phone if they prefer, she said.

"While this is a heartbreaking situation, and it's a difficult thing for a woman to have to experience, we're hoping that women will respond positively (to the survey) and want to participate just so that we can prevent stillbirths in the future," Stone said.

Jackson described her first few months following the death of her son as "a point of time when it was hard to consider getting out of bed."

"Losing a baby tends to be a fairly unique experience, because you grieve not only not having them, but you grieve ... the life that would have been," she said.

Her focus since having to say goodbye to him, Jackson said, has been to celebrate and magnify Mckai's brief lifetime. He is already a significant part of the lives of his siblings, ages 5 and 2, who understand "they have a big brother that's in heaven," she said. "He is meaningful and important to us."